Long Hard Road Out of Hell

As some of you know from Emily Warn’s recent post, my recent extended absence from Harriet has been due to severe illness and a long hospital stay. I hope to begin blogging regularly soon.
The short version: I was in the hospital for over a month, and almost died during the first week. According to my infectious disease doctor, by the odds, I should be dead.
The long version: Around April 14 I suffered a perforation of my small intestine which filled my abdominal cavity with unfriendly bacteria and led to a bad case of peritonitis, an inflammation of the intestinal tract. No one knows why or even exactly when the perforation occurred, so no one knows whether it might happen again, let alone how to keep it from recurring. The bacteria spread to my circulatory system, and I developed a nearly fatal case of septicemia, blood poisoning. I had three surgeries to clean out my abdomen over the course of ten days, including a resectioning that removed part of my small intestine (in addition to the portion of my colon that was removed in November along with my tumor) because it was irreparably infected. I was so swollen and distended that I couldn’t be fully closed up after the first two procedures, because the internal pressure would have been too great. Before the first operation, my blood pressure collapsed (to something like 40 over 20), I had a heart attack, and my kidneys briefly stopped functioning; immediately after the second procedure, as I was coming out of anesthesia, I had a seizure. For quite a while I was on a ventilator, because I couldn’t breathe on my own. The surgeon also discovered a bone fragment in my liver, probably the cause of some of my pain in that region.

I was unconscious or semi-conscious at most for all of this, so I have no memory of these events. I only know they happened because Robert (and my doctors) told me about them. Indeed, Robert knows more about what happened to me than I do, since he was there, while I wasn’t, at least not in any meaningful sense. I remember waking up at one point while Robert, who came to see me every day for as long as they would let him stay, was with me in the intensive care unit, and asking how long I’d been there. “Two weeks,” he replied.
That I could have died and not even known I was dying, not known that anything was happening at all, is terrifying to me, even more than the (quite terrifying in itself) knowledge that I almost died itself. There’s an element of adding primal insult to injury in the thought that my own death wouldn’t even be part of my experience, as if it weren’t mine at all.
For me, writing all this down has the dual and perhaps contradictory effect of simultaneously bringing these events closer and keeping them at a distance; it serves both to internalize and to externalize what happened to me. Writing something down, achieving the mental distance to give it shape and form, is a way to gain control over experience, rather than be overwhelmed by it. But I didn’t experience these things at the time; my knowledge of them is all after the fact. So writing this is also a way of making these experiences mine, of internalizing these events so that they become part of my experience. It makes them simultaneously more real (more mine) and less real (less crushing).
I’ve written before that I don’t find being ill interesting, and illness is in general not interesting. But some of the mind’s ways of coping with the body’s utter helplessness are. I was very heavily sedated for the first two weeks or so of my hospital stay, largely for my own protection—so that I wouldn’t, for example, try to rip the breathing tube out of my throat. (My wrists were in restraints for the same reason.) One strong effect of the sedation was to produce very vivid and often frightening hallucinations. At first, the hallucinations were distinct from reality, and I was often aware that I was in an hallucination. One involved playing a game based on the Disney animated series Kim Possible, about a high school cheerleader who also saves the world on a regular basis. I was on a high-speed train whose tracks were the ceiling tracks to which the hospital curtains were attached. If I could finish the game successfully, I would be able to escape the hallucination and get back to reality. But of course I couldn’t, so I was trapped. I had another hallucination that I was in the car with Robert (I could sense his presence but I couldn’t see or hear him—I spent a lot of time in my hallucinations looking for him, knowing that he was somewhere just out of reach), going from restaurant to restaurant all over town to compare their food, except that the windows were completely opaque and the car never moved. I was just stuck there, knowing that there was a world outside the car, but unable to reach it, though I could place orders for the food I’d never get to eat or even see.
As I became more conscious, the hallucinations began to merge with the reality of my immersion in the intensive care unit. This was a bad thing, as the lines between hallucination and reality became more and more blurred, and I could never figure out whether something was real or a delusion. I became convinced that, as in some horror movie in which an autopsy is performed on a man who is paralyzed but still alive, the hospital and its staff were trying to kill me. Robert tells me that they would ask if I wanted any pain medicine (I was in constant agony) and I would shake my head in terror, fearing what they might inject me with. He’d then ask me and I’d nod yes. That they gave me the shots despite my refusals further convinced me of their evil intentions. When the nurse took out the breathing tube on which I’d been dependent, I accused her of trying to kill me. When she denied trying to suffocate me, I cried out (with a strength that apparently surprised everyone) “You lie!” When Robert pointed out fifteen minutes or so later that I was still alive, I considered the situation, and then replied, “Sometimes it takes a while to die.”
For much of this time I couldn’t even talk, because of the breathing tube down my throat (at times I was partially paralyzed, doubtless by all the sedation). Even when the breathing tube was taken out, I could only manage a few whispered, labored words before being overwhelmed by exhaustion. I got a clipboard and some paper from the nurses and would try to write messages like “Don’t kill me” and “I can speak,” but they just came out as scrawls and scribbles, because my limbs were so weak and atrophied.
As the days went by and I became more lucid, I would test my delusions to see whether I had gotten back to reality. I became more fully aware of Robert during his visits, which was a great relief—as I wrote above, I spent a lot of my time while unconscious searching for him. (Robert tells me that even when I was unconscious I would occasionally wake for a few seconds, and if he was there I would touch and even grab him, to make sure that he was real. Sometimes I almost choked him.) I remember one day in particular during which I felt a great sense of relief—“Okay, this is actually real”—until something happened (I can’t remember what) and I realized, “Oh no, I’m still in a delusion.” When the random patterns on the acoustic ceiling tiles stopped looking as if someone had covered the tiles with every possible word or phrase (in several languages) that began with the letter “I” (including every pop song title imaginable), then I knew I had finally returned to reality, though prior to that day there were several times when I wanted to point out to Robert how clever whoever had created that ceiling palimpsest was.
That, though, only takes me to about three weeks into my hospital stay, the rest of which was taken up with recovery and rehabilitation. And though I am finally at home, the road to wellness is long and winding. I have a large open wound along the entire length of my abdomen (it makes my colon surgery scar look like a little scratch), covered by a substantial dressing that must be changed by a registered nurse three times a week (a delicate and uncomfortable procedure). The wound is drained by a vacuum pump that is my newest and most indispensible fashion accessory; this must be detached and reattached each time the dressing is changed, and must provide an airtight seal. (The wound is apparently healing well—the nurses who’ve changed the dressing keep saying how “nice” it is.) And given the extent and intensity of my infections, I will be receiving daily intravenous antibiotic infusions into the foreseeable future—as of now, the medication has no stop date. Thanks to home health care, these are things that can be tended to in my own home. Thanks to a modicum of health insurance coverage, these are essentials to which I can actually (though just barely) afford access.
There is always the pain: dull, sharp, throbbing, stabbing, gradually building or suddenly overwhelming, ranging from the persistently uncomfortable to the excruciating. One day a physical therapist asked me, “Do you have pain?” I had to explain that the question isn’t whether I have pain, but how much pain, what kind of pain, and where. Even with the various painkillers I’ve been on continuously since my admission to the hospital, painkillers I’m now in the process of trying to wean myself from, since they’re addictive and also cause constipation of epic proportions, I’ve yet to have a day free of pain. It’s only recently that I’ve had any extended respites from pain. But though the pain subsides, it never entirely goes away. There is also the exhaustion brought on by the simplest household tasks, like walking from one room to another, due to the atrophying of my limbs after a month of lying in a very uncomfortable hospital bed. I spent a substantial amount of my time and energy in the hospital learning how to sit up again, how to stand again, how to walk again, regained skills which I now practice many times a day just going from one room to another in my house.
I don’t know how to end this piece, especially given that the story hasn’t ended—I don’t know how things will turn out, though I’m told that I’m healing well. Perhaps that optimistic note is the best place to stop.

Reginald, This was heartbreaking to read. I know words are small comfort at times like these, but I join everyone here in wishing you all the best in your recovery. It’s time the universe took it easy on you, I think.
mr

Found this post through Ron Silliman’s blog and I have to say I am glad to have read it. I just started nursing school and work as a technician in a major hospital. I am in contact with many ICU patients and your descrption of the experience was truly helpful. I hope the best for your recovery.

What I fear is that –as you have so ably described — I will awake in a hospital bed unable to move, in restraints, on a respirator. So I have a standing DNR order and a living will and have had long long discussions with my wife about in what circumstances she should let me go and in what circumstances she should approve treatment to try to save me.
The DNR order caused a great deal of consternation among my doctors before a recent procedure. They all felt I was too young, to strong and too full of life for such an order, but they warned me that if the procedure went bad, I would be on a respirator for some short period of time. But they all felt it would be worth it, it would be worth their efforts to save me. So this time only, after a discussion with my wife, I waived the order. The procedure went without incident.
Though I am glad you have weathered this crisis, what I wonder is, do you think it was worth it for you and for Robert? Was the intervention by the doctors not extra-ordinary but sufficiently ordinary for you to endure the pain you have already gone through and the recovery you are going through?
I ask this because I’m always trying to reframe for myself when enough is enough.

Incredible. That you made it through so much and have shared the extremes with us even before there is an end in sight for the pain is utterly amazing to me. I just went through three months of some strange “episodes” that blossomed extra-symptoms, without a diagnosis, and really began to think about what life must be like for people who are chronically ill (of course, my situation is not even remotely comparable to your own). I really don’t know how people “get on with it.” Though the symptoms were debilitating for awhile, I became quite depressed and kept telling myself that I needed to get a better attitude. After awhile, I couldn’t tell if the physical stuff was keeping me laid up or if it was my own depression at the thought of dealing with an ongoing illness. Long story short, the fact that you are able to share your experience and educate people like the soon-to-be nurse above and myself is inspiring and motivational. Thank you for your resolve and dedication to get better and be yourself despite the physical difficulties. May your recovery be fast and complete.
Amy